Enabled/Habilitado: Thoughts on disability - Reflecciones sobre discapacidad

  Texto en Español sigue del texto en Inglés Some weeks ago, I was in the emergency room because the suprapubic catheter I have had a blockage, making it hard for me to go to the bathroom, causing spasms and pain. We waited (Nor was with me for this) a couple of hours, first to see a nurse, and then another couple of hours to see a doctor and get test results. Part of the back and forth among the staff, I discovered, was that there was not a nurse trained in urology who could exchange the suprapubic catheter, and so after about six hours (a small wait by today’s emergency room wait times), someone came to flush out the same catheter with sterile saline solution, and encouraged me to make an appointment with the urology department to have the catheter switched out. I felt a familiar sense of strangeness – thinking about the times when my disability has seemed “just beyond” the expertise and the infrastructure of healthcare. More often than not, it has seemed to me that healthcare ra...

Texto en Español sigue del texto en Inglés In college, I was gifted the book Tuesday’s with Morrie . I loved the book. It felt like something I could read and start re-reading as soon as I finished it – still finding some new insight. I would often flip to some part that I found particularly powerful or inspiring, and my copy had pages with the corners folded over where I had found something particularly inspiring, or heart-warming. I have not read in book in a very long time, and am not sure where this copy got to, but I suspect, were I to re-read it, I would still be moved to tears by some of its passages. Back then, I aspired to be like Morrie. I admired his wisdom and ability to learn from the Amyotrophic lateral sclerosis, ALS , that slowly destroyed his body. In some ways, he reminded me of my third-grade teacher Lupita , trying to distill the life lesson from suffering and being forward and direct with her struggles, rather than trying to hide or conceal them. I also admired Mo...

Texto en Español sigue del texto en Inglés One of the pieces of legislation I have come to truly admire in the United States is the Americans with Disabilities Act . To me, a piece of legislation that had persons with disabilities at its center and laid out the groundwork for how to increase accessibility and participation means so much. I would have been six years old when the ADA passed in 1990, but growing up outside of the United States, I had no concept that such legislation could exist. This is not to say that it has been perfect, or that enforcement has come easily or consistently, and having rights and voice enshrined in a document is still something for which I am grateful. In 2017, I had the enormous privilege of being asked to participate on a panel at the Department of Labor commemorating the 27 th anniversary of the Americans with Disabilities Act. The event was put on by the Disability Action Group, the affinity group for individuals with visible and invisible disabili...

  Texto en Español sigue del texto en Inglés In September, 2012, I had the opportunity to attend the Fifth Session of the Conference of State Parties to the Convention on the Rights of Persons with Disabilities (UNCRPD), along with my classmate and friend AJ. This was through American University’s School of International Service, where I had begun studying a graduate degree. I had been to the United Nations once, some eight years prior, as part of a group of students participating in the College of Wooster’s Model United Nations program. Most of the activities had happened at a New York City hotel, but the final “plenary” session took place in the General Assembly Hall, which quickly filled with students from colleges and universities from across the United States and several other countries. It was a great experience, and I remember the guided tour of the United Nations building, its halls, symbolic artwork, and neatly rowed desks with country placards. At the time, I could onl...

  Texto en Español sigue del texto en Inglés As I moved to Wooster, Ohio for my undergraduate degree at the College of Wooster , I was still wrestling with the “communicating” Spina Bifida – who to tell how much and what their reaction might be. I felt deeply divided about all these questions caught between being afraid that any disclosure would send someone (and especially a significant other) running for the hills, yet somehow also feeling ashamed and angry that NOT disclosing and giving more information and details was some sort of cruel withhold. I was also mulling how my self-esteem seemed so bound up in how other people saw me (or didn’t see me), and the degree to which I even wanted to know how people saw me or not. I feel I went through phases of “strategic disclosure”, mostly giving need-to-know people need-to-know information on a need-to-know basis, and even then, a lot of my more embarrassing traits were shoved under “pain”, hoping to quickly end the conversation. The l...